Parents of disabled children face large increases in cost of care
by Tom Scheck, Minnesota Public Radio
June 10, 2003

Under the new state budget, Chloette and Jerry Haley of Stillwater will have to pay $415 a month for a plan that helps them care for their son, Luke. (MPR Photo/Tom Scheck)

About 4,700 Minnesota families with disabled children have until July 1 to decide whether to continue participating in a state-sponsored supplemental insurance plan. The Department of Human Services is sending letters to families notifying them that rates could go up to 1,000 percent higher as a result of state budget cuts. Proponents of the new law say the fees are based on a family's ability to pay. But several families say they can't afford the increase.

St. Paul, Minn. —
Fifteen-year-old Luke Haley has William's Syndrome. It's a rare, congenital disorder that causes motor control problems. It also causes developmental delays and learning disabilities. He spent his morning watching videos, talking about a recent air show and playing with a toy that helps him spell.

Luke's parents, Chloette and Jerry Haley, say they pay $150 a month for a medical assistance plan for chidren with disabilities. That pays for a personal care assistant who helps with Luke's feeding, bathing and therapy. Under the new state budget, the Stillwater family will have to pay $415 a month for the plan. Co-pays for prescription drugs will also go up. Chloette Haley says the family of four can't afford the increase.

"We're a middle class family and I'm sure like many other middle class families there's not a lot of extra money hanging around. We do not have it at this point, that extra $300 a month," she says.

The Haley's make $70,000 a year. They say they've already taken out a second mortgage so they could make do when Jerry Haley left his teaching job and went on disability for depression. The family relies mostly on Chloette's income as a grants coordinator. Jerry says the Haleys are thinking about taking money from his retirement savings to pay for Luke's care. He says the fee increases have caught them by surprise.

If your kid was choosing to play hockey, it wouldn't be unusual to pay those kinds of expenses. My son is in a marching band and we averaged out for the year, the trips that they have taken it would be in those ranges. I know it's a sacrifice, but I hope they would be balanced in their thinking.- Rep. Fran Bradley, R-Rochester

"A 300-percent increase in one year doesn't really give us time to plan to come up with that extra money. And so even though it's based on an ability to pay, we don't have the flexibility, especially within one year," he says.

The fee increase is a part of a $7.4 billion health and human services budget that Gov. Pawlenty signed into law. The budget cuts to this program save the state $4 million over the next two years. The Legislature and Gov. Pawlenty passed an overall budget that erased a $4.2 billion deficit without raising taxes.

"It's a change from what people have been paying in the past and it will have an impact on their pocketbooks. It is based on an ability to pay," says Health and Human Services Commissioner Kevin Goodno, who says most families aren't seeing a large fee increase in terms of actual dollars.

He says under the new sliding fee scale, many families will see an incrase from $25 a month to $100 a month.

"When you look at $100 a month or $1,200 a year to care for a disabled individual, in the big scheme of things you have to ask where your priorites are? What you're spending your money on. That doesn't mean it won't be a hardship on some people just as it is a challenge to raise a child with disabilities. This is another one of those challenges."

But groups that represent the disabled say the new plan could force parents to put their disabled children in a group home.

Bob Brick, the public policy director with the Pacer Center, a parent advocacy group for the disabled, says the state is considered a leader for keeping the disabled out of group homes. He fears the fee increases could force parents to make some tough choices.

"It's to the advantage to all Minnesota taxpayers to have children with disabilities live within their family homes," he says. "To keep them intact as long as possible. And when we break that promise to families and they start falling apart we are very concerned that the cost to taxpayers will increase tremendously."

Rep. Fran Bradley, R-Rochester, says he doesn't believe many families will consider putting their children in group homes. The Rochester Republican, who chairs the House Health and Human Services Finance Committee, says the increased fees still amount to a lot less than what families would pay without state assistance.

"For that price, you're still getting quite a bargain. If your kid was choosing to play hockey, it wouldn't be unusual to pay those kinds of expenses. My son is in a marching band and we averaged out for the year, the trips that they have taken it would be in those ranges. I know it's a sacrifice, but I hope they would be balanced in their thinking."

Critics say the supplemental insurance program is different than student-related fees. They say Gov. Pawlenty should abandon his no-new-taxes pledge next year if necessary to restore the funding.